Responsible patient advocacy: perspectives from the Alpha-1 Foundation.
Am J Med Genet A
; 146A(22): 2845-50, 2008 Nov 15.
Article
en En
| MEDLINE
| ID: mdl-18932220
ABSTRACT
Patient advocacy groups play an increasingly prominent role in patient care and clinical research. To help manage some of the unique challenges associated with the involvement of patient-centered organizations in the delivery of medical services and conduct of clinical research, patient advocacy groups may wish to establish an ethics advisory board. Although hospitals and government agencies often adopt this approach, ethics advisory boards have not been widely used by patient advocacy groups. We report on the experiences of an ethics advisory board for a patient advocacy group actively involved in genetic testing and clinical research. Drawing on the experiences of this organization, we examine the potential advantages and limitations of this approach to navigating the complex moral terrain of contemporary medicine and biomedical research.
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Defensa del Paciente
Tipo de estudio:
Prognostic_studies
Límite:
Humans
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Am J Med Genet A
Asunto de la revista:
GENETICA MEDICA
Año:
2008
Tipo del documento:
Article
País de afiliación:
Estados Unidos